When I was originally diagnosed in 2018, I decided that I wanted to recover from surgery and move on with my life. I didn’t want to hear the word “cancer” anymore. But in April 2019, my life changed as I was informed I had a reoccurrence of cervical cancer and I decided I wanted to be a change agent.
I started with my community by sharing my story with those connected to me via social media but in 2021 I felt like it just wasn’t enough. After speaking with the Cervivor community, I decided to redefine my patient advocacy in 2022.
Here’s a snapshot of how my 2022 has gone so far:
January 2022 I participated in an interview with NPR (National Public Radio) in reference to cervical cancer among Black women that was aired in Georgia and via their social media handles. I also joined the Texas HPV Coalition to raise awareness as it relates to the HPV vaccine.
February 2022 I was a panelist for the Black Women and Cervical Cancer Webinar hosted by Cervivor. My children and I were also a part of a PSA for HPV Awareness Day through the National HPV Vaccination Roundtable and Association of Immunization Managers that was featured on television and in physician’s offices in Tennessee and also via their social media handles.
March 2022 I completed volunteer training with the American Cancer Society which allows me to share my story locally through ACS CAN. I also completed a radio interview with Zakiya Jenkins who is based in Iowa in reference to cervical cancer in the African American communities. This interview was aired in Iowa and on Ms. Jenkins’ social media handles.
April 2022 I spoke at the Women of Color, Inc. brunch as it relates to cervical cancer among Black women, prevention, and early detection. I also spoke at YES Prep secondary school through the American Cancer Society where I shared my story and encouraged families to research the HPV vaccine.
May 2022 I spoke at Green Valley Elementary school through the American Cancer Society where I shared my story and encouraged families to research the HPV vaccine for their children. I was also chosen to be a Cervix committee Patient Advocate through NRG Oncology.
June 2022 I spoke at the HPV forum with the American Cancer Society, shared my story at a National Cancer Survivor’s Day event in Charleston, SC, and was a panelist for the Tigerlily Listening Summit powered by Labcorb, in which I shared my story and shared my experience as a patient including the disparities among African American women.
As a result, the last six months have blown my mind and have shown me just how much our stories have the power to create change. I encourage all of you to share your story. Be a change agent for this community and get active because you can redefine your advocacy in 2022!
Kimberly is the 2022 Cervivor Rising Star recipient, a joy-sparking, active member of the Cervivor community who is moving mountains.Thank you for all you are doing to end cervical cancer!
Teolita and her mom, Dr. Nina Rickenbacker Edwards
Teolita repeatedly told other women, “Do not let stigmas, lack of knowledge, or shame, prevent you from taking care of yourself. What I want all women to know is make sure you listen to your body and seek medical attention if something isn’t right.” She was a staunch believer that being assertive and advocating for yourself was half the battle around cervical cancer. Her mother, Nina, now carries on Teolita’s message. Teolita passed away in August 2019, after a five-year fight with stage 4 cervical cancer.
Despite the fact that cervical cancer is preventable and treatable, the National Cancer Institute (NCI) estimated that 4,290 women would die of cervical cancer in the United States in 2021. As the country observes Black History Month, it is especially poignant to recognize the fact that Black women throughout the U.S. are dying from cervical cancer at a disproportionate rate, according to a January Human Rights Watch report entitled We Need Access.
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Getting to the root of health disparity
This difference, linked with social, economical or environmental disadvantage, or health disparity, is posing a major concern for Black women in the state of Georgia, like Teolita who was never screened for cervical cancer, diagnosed at a later stage, and had a lower than five-year survival rate.
While we at Cervivor are hellbent on focusing on surviving cervical cancer and thriving, we must look at the barriers, challenges and be laser-focused on the points that make some of us uncomfortable. Yes, we’re talking about economic, historic, and structural or institutional racism.
Here’s the breakdown of how Black women are impacted, disenfranchised, and disproportionately impacted:
Healthcare affordability and access
Lack of comprehensive sexual health education
Historic mistreatment of people of color, particularly Black people, by the healthcare community
HRW women’s rights researcher Annerieke Daniel, said, “We really have to look at the result of racism and discrimination in the health care field and especially looking at gynecological care, which we know is rooted in abuse and exploitation of Black people, of Black women, of Black bodies.”
How can we make a meaningful difference?
Help increase screening rates. Increasing screening rates could greatly reduce deaths from cervical cancer among Black women, Hispanic women, and other underrepresented communities. This requires the delivery of interventions directly to underserved women such as screenings based at accessible locations closer to their places of residence – such as via mobile vans and/or screening locations at local community centers instead of medical clinics. This can substantially lower cervical cancer mortality rates through early detection.
Encourage clinical trial participation.A lack of racial and ethnic diversity in both cancer research and the healthcare workforce is one of the major factors contributing to cancer health disparities, according to the American Association of Cancer Research. Clinical trials lead to the development of new interventions and new drugs. They are used to make better clinical decisions, but there is often a significant underrepresentation in clinical trials by non-White races and ethnicities. With a focus on targeted therapies and precision medicine, representation in clinical trials is increasingly important so that research includes and reflects all groups. Where to start? Share links to www.clinicaltrials.gov – where clinical trials are listed and searchable by location, disease, medicine, etc.
Gladys knows all too well the struggle of health care challenges as a Black woman. Before she was diagnosed with stage one squamous cell carcinoma in 2013, she had to demand medical attention, she said.
“I went to have my annual physical exam and requested to have a Pap smear. The physician did not want to give me one, according to the guidelines, stating that I was not required to have a Pap smear,” said Gladys. “I insisted that I have one and reluctantly, he gave me one. A few days later, the physician called to tell me that I needed to see a gynecologist. My test came back abnormal. I made an appointment to see my gynecologist. He did an exam and told me I needed to see an oncologist. The oncologist said I had stage I cervical cancer.”
The advocacy and support required is the very reason Cervivor exists. It also exists to educate everyone – whether they are diagnosed or not, whether they know someone with cancer, or not, and no matter how they identify – about cervical cancer and its prevention.
Black women helping to change the course and legacy of cervical cancer
One of those lessons includes the impact of Henrietta Lacks whose cells were used in groundbreaking cancer research. Lacks, a Black woman, was 31 when she lost her battle with cervical cancer in 1951. Despite her passing, she posthumously helped advance cancer research. Her cells, referred to in the medical field after Lacks as “HeLa” cells were cultured from her tumors, survived and multiplied outside her body thus contributing to medical breakthroughs including the development of several treatments and vaccines, including the HPV vaccines. Despite the fact that doctors did not tell Lacks’ family that her cells were being cultured, the groundbreaking effort is a notable moment in Black history.
Chellesse Parker, was diagnosed at 29 and years later is thriving. One thing she made sure of during her own journey, was to ensure her daughter is armed against cervical cancer despite the challenges facing Black women.
“There are a lot of things I can’t protect her against but this is something that I can prevent,” she said.
Research tells us that when cervical cancer is detected and treated early enough, women have a 93 percent five-year survival rate. We like these numbers and must rid ourselves of the disparate stats harshly impacting Black women. Every woman deserves to be screened, to receive equitable treatment, and to know they have a fighting chance at being a Cervivor! Let’s fight collectively to protect, prevent and prevail!
Read more about Black women cervical cancer survivors who we honor, celebrate and appreciate. For more resources on cervical cancer, awareness, and representation connect with us on our social media platforms and Cervivor.org.
